Archive for the ‘Friendship’ Category

Since we’re still stuck in the hospital in somewhat of a holding pattern, waiting for the surgery date to arrive, I’ve been doing a lot of daydreaming and plotting. Naturally, inspired by the new year, new decade, and in part by the outpouring of support from all walks of my life, I’ve been trying to come up with a way to bring my worlds together and to be able to spend real time with people. Ways to show my appreciation and gratitude for their care.

I love to entertain and I love evenings spent enjoying food, drink, lively conversation and games. There’s a Barefoot Contessa episode where she’s in Paris and one of the expat chefs she cooks with explains that he and his wife started hosting weekly dinner parties where they welcomed strangers from their neighborhood as a way to get to meet people. I love the idea.

We actually started doing monthly summer dinners with a few neighbors last year that have been such a fun way to connect with the people around us. When I’ve mentioned this to other friends, the reaction is always one of surprise. I’ve found that quite a lot of people don’t really know their neighbors anymore, and if even they know them, they don’t socialize with them. I’ve really loved our dinners and look forward to this summer when we get back to it!

While I’ve been here contemplating things I’d like to do in the new year, not resolutions, mostly actions, my husband shared a Facebook post from a colleague who lives in New Jersey (his company welcomes people working remotely so their staff are all over the country, and a couple even outside the country). She and her husband starting hosting monthly pasta dinners when they purchased their home as way to entertain, meet new people, see existing friends, and make use of their new home. I loved it and wanted to know more about how they came to do this. Turns out they were inspired by a blog post on Serious Eats, where a couple decided to do a weekly Friday Night Meatballs dinner.

The point of the evenings is to bring people together not to impress everyone with your culinary prowess or to spend a week preparing for these evenings. It’s about keeping things simple, sharing your space and time connecting with people in your life and connecting people in your life with each other. The mix of guests can be forever changing even if the meal itself remains the same, dinner after dinner. Evenings can end up with lively games and other fun simple entertainment – impromptu karaoke anyone?

I’m dreaming of being home and figuring out how this idea can find its way into our routine. One of the greatest gifts of Cole’s spinal surgery journey has been the recognition that we have a big community of people who care about us. I really want to welcome them into our real life and implementing a regular dinner night seems like a perfect way to do just that. I can’t wait to see who will actually join us! I really hope we have a revolving mix of people open to the magic of togetherness!

It’s hard to believe that 2019 is coming to an end – not only 2019 but the decade. It’s hard not to have this past month define much of 2019, but the reality is there have been a lot of things that happened in 2019 that are to be celebrated. Perhaps looking back, our current hospital adventures will be celebrated too. At the very least, our survival of them!

One of the things I’ve worked on this past decade is to be more open to asking for and accepting help. Somewhere in the last few years I started going to a special needs moms support group, which started opening me up to exposing myself. I also have a couple of dear friends who encourage the same of me and it’s transforming my psyche. I’m definitely a work in progress and will probably always be such but learning to be open to change and vulnerability have impacted my life in more ways than just as a mom.

I’m not good at resolutions so my interest in the start of a new year doesn’t really lie in committing myself to do this or improve that. The usual things like devoting more time to wellness (fitness/healthy eating/sleeping), finding balance in life, being my best self are ongoing endeavors. A couple of years ago I challenged myself (along with a friend) to try to do new or different things throughout the year. That too is something I hope to continue to explore. I was gifted a guitar for Christmas this year so learning to play is on the agenda – I have some lofty songs I hope to eventually master! I also want to challenge myself to write more – whether it’s this blog, short stories or even letters to loved ones. The practice is cathartic and I dream of one day having something published, making the practice even more important.

I see 2020 being the start of a movement where I strive to be more present with my time, care and interest in my family, friends and others. I greatly appreciate the simple, but intimate joy, of spending time with people I care about or am interested to know better over shared meals, experiences and time. I don’t feel like I do it enough though and really want to have impromptu meals, game nights, afternoons hiking with friends. I’m at an age where life feels more fleeting. An age where both peers and parents are leaving us or are facing health challenges. Time shared is so much more valuable than any purchased gift. My perspective of this value has deepened as I’ve aged and I feel strongly about drawing my community more into my everyday life, holding them dear and near, celebrating nothing and everything.

On that note, slightly in advance, here’s to a bright 2020! I wish you all a glorious new year filled with promise, joy and love!

We’re closing our 6th day of pretty much living at Children’s Hospital LA (CHLA). Cole was admitted last Wednesday and will be here until the end of the year, maybe just into 2020. We’re surviving. Actually better than surviving. We’re getting into a routine where we’re both hanging out with Cole during the day and then one of us goes home to attempt a good night of sleep and to spend some time with Luna, our poor, needy ten year old Golden Doodle. Then it’s back to CHLA.

Cole’s days are filled with lots of nurses, doctors, residents, and various support staff popping in for vitals, to add weight to his traction, to help us with anything we need – like transferring him from the bed to the traction wheelchair for an outing or helping with other needs. He’s also had a barrage of very welcome and much appreciated visitors. At first it felt overwhelming but now that he’s more settled and doing remarkably well with the traction, the visits have been a great source of joy. For him, and for us.

It took me a long time to understand that it’s okay to ask for help, support, or care. Early into my parenting journey, I did my best to be an island. I have always been a pretty self-sufficient person and in fact often served as the maternal one amongst my pack of friends when I was single. I’m pretty good about jumping in when someone is in need and am always at the ready to help. I’m appreciative when someone recognizes that I am in need, but in the past it was hard for me to fully accept it.

Nowadays, I try to ask. I reach out to friends when I’m struggling and I have tried to build a support network so that I don’t have to go through things alone (I should clarify that my husband is the biggest part of my support and a great partner – but he’s also sometimes going through the same things as I am such as Cole’s current medical situation). I was part of a special needs mom’s group for a while, which I think is where I both realized how much I like having people in my life who understand some of the unique parts of my parenting experience, and how valuable regular sharing is to me.

I’ve learned that being an island is not what’s best for me. I like knowing that people are thinking of me and wishing my family well, particularly in high stress situations like the traction and looming spinal fusion surgery. I also really like being able to show the same support and care to my friends, near, far, and in the social media stratosphere. It’s one of the most positive aspects of social media – the strength and heart of many. I know not everyone feels this way but having gone through some of Cole’s surgeries quietly and the more recent ones more publicly, I can honestly say that the impact of sharing truly helps to quell fears, stand tall, and to make it through the long days and nights.

So keep the love coming and know that if ever you find yourself in need, I’ll be there for you.

Thanksgiving has become a holiday where we, my pod of three, frequently find ourselves trying to figure out how and with whom we’ll celebrate. For a number of years we joined extended family for a chaotic feast, but it wound up not being quite right so we hosted a couple of dinners ourselves, inviting other families and friends who were similarly without plans. We’ve been invited to share with the clan of a close friend several times, a dinner that was always warm, festive, and full of great conversation and cheer. The clan has since grown considerably so the dinner is now relegated to clan only, which seems right. Last year we again hosted with a couple of families, one of which was transitioning via a divorce and in need of a new experience to help get through the holidays. And this year, we’ll be sharing with them and their extended family as guests – though they’re as close to us as family comes – in what may be their new tradition.

Thanksgiving is likely my favorite holiday when it’s well celebrated. It’s a time of year where we tend to reflect on things that are important and where the best part of the festivities is simply spending quality time with those we hold dear, sharing a glorious meal, laughter, gratitude, and care. The celebration can languish over wine and conversation, or move to game playing like our dinner last year, leaving bellies full and souls sated. In my mind, it’s the perfect dinner party…

This year particularly I’m counting my blessings as we are all gearing up for Cole’s surgery next week. My nerves are right at the surface, so I’ll be spending some of the long weekend preparing the house and freezer for our week at the hospital, and then those first few days home when we’re getting our bearings in terms of caring for Cole and his new back. We work well once we figure out the best routine so I know it will get easier as we settle home.

I plan to decorate Cole’s room with heaps of holiday decorations so it feels festive and Christmasy. It’s likely he’s going to miss his favorite holiday celebration, Christmas Eve dinner at his uncle’s house. The two share a love of Christmas and my brother puts on a wonderful Christmas Eve celebration every year that Cole looks forward to and adores more than anything in the world. I want to transform his room into a winter wonderland while he’s still in hospital. It breaks my heart that he’ll miss it this year so I feel compelled to create some new holiday cheer for him to make up for it just a little.

I’m grateful to have a tribe of friends and family who will be around to support Cole, Dan and I through this.

Happy Thanksgiving to you and yours! I hope you’re festivities are full of love and joy!

A friend recently told me about a study that concluded that the chronic stress special needs parents experience is akin to the stress experienced by combat soldiers. It’s a shocking comparison but the reality of the continued level of care of a special needs child adds complexities to the lives of the parents for their rest of our lives. I get it. My son is eighteen now. Nothing about his care has changed in terms of his needs except I’m now eighteen years older and he’s a lot taller and heavier.

While we strive to provide him with as much independence as possible, and with a rich life outside of home and school, it doesn’t come easy. As parents of special needs children know, nothing about our children is easy. We fight for adequate, affordable medical care, inclusive education opportunities (for which we have annual IEPs that require a lot of prep and determination to ensure that our child’s rights are protected, his needs met, etc.), we work hard to maintain friendships and social opportunities, we bathe, dress, transport, transition, entertain, feed, tend to personal needs, fight bureaucracy and support our children in every way imaginable. We do it with love and care because we love and are dedicated to our children.

The considerations that go into planning anything (restaurants, friend’s houses, travel, long outings) is daunting. You don’t just jump in the car and go (and you can’t send him off in someone else’s car because you need a wheelchair accessible van). You need to ensure that your destination is wheelchair accessible, that you have access to reasonable bathroom accommodations for changes, that your friend’s house doesn’t have a steep drive way with multi level floors or steps leading up to the house, that the restaurant can accommodate a wheelchair, and more.

I also recognize how fortunate I am to have a partner who shares all of the parenting demands. He’s highly involved and supportive of both Cole and me. Not all families have the luxury of two able bodied, loving, involved parents.

But it isn’t easy and there’s rarely a break. Our kids needs don’t change as they age. While typical peers are walking, talking, dressing themselves, making friends, feeding themselves, showering, toileting, going to school, learning to drive, going out with friends, attending concerts or movies or dating, we are still taking care of our kids. When typical peers are heading to college and moving out on their own, we are still taking care of our kids needs. We’re just a lot older, which makes some of it harder.

The physical nature of caring for a child like mine is that it puts a lot of stress on your body, especially as it ages, between the transfers, transitions, lifting (my son, thankfully, is small – just around 80 pounds), and the eighteen years of interrupted (and sometimes complete lack of) sleep. There’s no one else who is going be there, so you just do whatever needs to be done, no matter what state you are in.

A lot of us have kids with medical issues on top of everything else, so when my son exhibits some reflux occasionally, I begin to worry that his Crohn’s Disease is acting up, and when he’s scheduled to have a major surgery that has significant risks and requires a lot of juggling to get pre-op appointments and insurance issues lines up, there’s stress. When he comes home wet from a leaky g-tube, is there blockage, does he need a replacement, or incompetence? There’s also financial stress in that therapies, equipment, supplies and medical treatments, medications and procedures all come at a cost. And more stress.

My husband and I both work full time as well so there’s the added pressure of ensuring that work doesn’t drop and that we maintain good standing at our respective jobs. We are fortunate in that we both work for companies that have flex time and where we can work remotely if needed, like from the hospital while our son is recovering from a surgery for a week. We are fortunate that we have insurance, even if it’s not always easy to access certain benefits.

We don’t have family around who can physically help with childcare. We have found a couple of people who work really well with Cole and who, when available, are happy to spend time with him and to support us as well. Of course, at a big financial cost.

The idea of any kind of balance in your life when you have a 24/7 child and work full time is laughable. There’s not a lot of “me” or “us” time in your days – ever. The notion of self-care is just that – a notion – not a reality. As vital as self-care is, it’s just not something finds its way into daily routines with ease or consistency.

It’s hard to maintain friendships but I strive to do so because my friends are my sanity and lifeline. Without regular girl’s night outs, I’d lose my mind. The conversations, laughter and love feed my soul. It’s also hard to keep a marriage healthy when, as a couple, we have virtually no home time alone and rely on occasional date nights for some much-needed adult time. At this stage in life, having your social life still dictated by childcare availability is stressful and simply requiring childcare adds an additional cost to going out. Childcare often ends up costing more than the actual date. But no going out alone sometimes is not an option. It nourishes us and gives us much needed time together. It’s not a luxury. It’s a necessity.

Following the conversation about the stress comparison, I had what became a heated conversation with someone close to me who I thought had a sense of what my life is like and understood the pressures I live with and the total long term impact and worry exists in my life. Was I ever wrong. Instead of compassion about my concerns regarding the upcoming surgery and particularly how hard the recovery will be for Cole and us, I was admonished for getting upset and raising my voice. My heart broke.

While I don’t need or want recognition or accolades for doing what any parent would do in the same circumstances, a little understanding and care goes a long way. I love my son to the core, and I love being his mom. Nothing is more important to me than him being happy and living a life that is rich, full of experience, love and joy. But in that existence, we as parents, also need to have our own little bits of pleasure, peace, and ourselves. Without it we would implode.

Several months ago a dear friend asked me to be part of one of the segments of a podcast she created. It would be me, and another close friend, and her talking about the effect of having children with special needs on our lives. The three of us know each other well so despite my nervousness, I agreed to do it.

I arrived at the designated address and was directed to a studio where there were big microphones (the furry ones that get placed right up near your face) and some chairs. There were lots of audio crew people and producers and Amy, the host, our friend Dawn, and me. We sat and started chatting under Amy’s topic direction. The three of us each have a child with special needs. Amy’s daughter is Cole’s age and we’ve been close for twelve or thirteen years now. Cole and her daughter continue to be pals despite being at different high schools these past several years. Dawn is someone Amy and I met a few years ago at a support group. Her daughter is younger than our kiddos but she became a fast friend. So the set up felt comfortable and the conversation somewhat familiar though we delved deeper than we might over cocktails at a mom’s night out.

After a point, the other people and equipment sort of melted away and the conversation flowed easily. We recorded for an hour or more, shed a few tears, laughed a little and left our vulnerability on the floor. I left feeling pleased about doing something new, getting out of my comfort zone and not allowing my nerves to completely defeat me. Happy to have spent a little time sharing with two people I love and trust, and curious to know how it would all sound if and when it aired (is that what podcasts do? Air? Stream?).

Tomorrow, months since we recorded, our episode enters the world. It’s available on whatever platform you listen to podcasts on like Apple. The first five episodes of the podcast have all been released in the previous weeks and this is the final of this round. I hope there will be more seasons or whatever podcast runs are called because it’s a really interesting, thoughtful and thought provoking premise.

It’s called The Challengers with Amy Brenneman. It’s not a “I had a challenge and came through and everything is rosey” kind of look at challenges in life. It’s more about how life challenges have us (collectively) stepping more into humanity because of or inspite of the challenges. The guests she chose for the these first six are all fascinating and diverse. I highly recommend listening to all of them.

Sometimes I marvel at the things I know about because Cole is my son. While it’s now all old hat to us, we had an extra learning curve beyond simply being new parents, when he came into our world. We had all of the usual stuff and then all of the medical and therapeutic interventions to contend with, as well as quick introductions to agencies and supports and special education. And of course, random weird things that come into our life.

In case you don’t know, Cole is fed through a g-tube. The only way we could leave the NICU, after five long weeks, was to have a g-tube inserted because he was not able to suck a bottle or boob. We had hoped he would catch on when we got him home but seventeen years later he’s still tube fed.

Yesterday I was placing an order for his feeding supplies, which typically includes his formula, gravity flow bags and every other month a new mickey-button (the part that actually is inserted into his belly and held by a little tiny balloon that holds 5 cc’s of water). I was asked what size, because they like to have you repeat every detail of the order, your contact details and lots of details about Cole EVERY time you call to place a monthly order to make sure you are who you say you are and are ordering supplies for who you say you are ordering supplies for – I’m assuming because there’s a huge black market demand for formula and mickey-buttons. Anyway, I digress. I give the size, 16 French, and it occurs to me that I would never know what that means if not for Cole.

Tubing, often catheters and feeding tubing, is designated by French or “Fr” to note the size of the tubing. It’s a French scale where every millimeter is multiplied by .33 (Fun Fact: The French are fond of the number “3” – I deal with withholding tax at work and the France to US withholding tax is 33.33%), so Cole’s tube is 16Fr multiplied by .33, making it 5.28 millimeters wide. Pretty small.

In the years of parenting Cole, we have had to deal with some many different therapists, agencies, doctors and medical interventions. He’s had surgeries and treatments that exposed us to so many new adventures. When he was still small enough to be tucked in to a Baby Bjorn, he did acupuncture to help open his brain flow. I’d wear him and spend the whole time trying to keep him from puncturing me once his head was full of needles! He did botox in his hips and arms before it became mainstream for faces, he had his back and neck muscles supported with Japanese kinesio tape before it was available in the US, and now gets Watsu (aquatic Shiatsu) massage when he does aquatic therapy. I’m actually going to take a two day Watsu training class next weekend so I can take advantage of our pool and support his aquatic therapy at home too.

Being his mom keeps me on my toes and keeps me expanding my knowledge and researching every little potential interest, development, resource, product, therapy, intervention that I hear about related to cerebral palsy, communication, inclusion, education, life as an adult with special needs, etc. I’m sure I miss a lot but thankfully I have a community of moms who all do the same and we share. It’s a unique experience that thankfully we share with a welcoming wonderful community of likewise unique families.

I saw a post today, shared by a friend in Australia, about a friend of hers who just had a baby. There were complications with the delivery and her daughter has been diagnosed with cerebral palsy. The post was asking for donations for the baby’s current and future care. I wanted to write on the post that with seventeen years of experience with a similar child, it’s going to be okay and that despite the dramatic entry and overwhelming sense of the unknown, life will be joyful and their child will be loved and happy. I held back though because I’m never quite sure if people want to know this while they’re in the throes of trying to understand their new reality.

This doesn’t just apply to this particular situation. I struggle with it in all kinds of situations. I have come to realize that often people don’t want to know that there are other people who have walked the path before them and can shed some light on the journey. I also worry that it comes off as “know-it ally”, which is never my intention. So I often opt to hold my thoughts.

I, for one, am truly grateful for advice and support, and I cherish the guidance of those who have similar parenting journeys because between all of us working together we have quite a network of research, connections and experience that enriches the lives of our children beyond what one lone set of parents can do no matter how savvy.

One of my fantasies is to one day create a compound living situation, preferably near the beach, with a therapeutic swimming pool, accessible gym complete with an infrared sauna on the property, where other families like ours could all live with their 24/7 adult kids (either in independent homes or with family) and support one another. Some of us have kids that will likely remain with us for life but there are ways to provide some independence for them within a fixed community and to allow parents to have some independence as well. It’s a fantasy but not completely outside the realm of possibility.

We can go it alone but in my experience it’s always better with friends…

It’s one of my favorite song lyrics from the Leonard Cohen song Anthem, but a long standing notion that the crack or imperfection is what gives us a path to greater existence. Rumi, the Sufi poet and philosopher, has a similar oft quoted line, “The wound is the place where the light enters you.”, invoking the same idea of imperfection being a road to enlightenment.

I feel like this is the endless journey I have encouraged myself to pursue. It’s one of acceptance and betterment and I hope to travel it for the rest of my life. For most of my teen and adult years I’ve struggled with confidence, self-love, and frequently battled myself and losing. I tend to be my own worst enemy and harshest critic. I allow my insecurities to shout the loudest and engage them to idly defend me when I feel put upon or angered. They’re not my best voice because they prevent me from seeing myself or allowing me to be vulnerable. They’re cruel and lash out. They deflect.

I’m trying to teach myself to step back and react from my heart even if it means admitting I’m culpable in an action or behavior or that I myself feel hurt or scorned by someone or an action. Decades of unfettered reaction are slow to turn around but it’s an effort worth taking because when I’m successful, when I approach conflict with calm and sincerity, it’s resolved amicably nearly always.

I want to be a good example for my son, an example of someone who has flaws but is constantly trying to evolve and resolve and flow. I want him to see that he can be fluid in this way and open his heart and mind to be kind and caring even in conflict or stress. I want him to know that the pursuit of enlightenment is something more personal and internal for every one of us, but that the result of this endeavor results in a gentler, kinder community and world.

When I was a kid, I was often as described as “nice”. I kind of hated it because I likely wanted to be thought of as the pretty one or the cool one or the smart one. No, I was the nice one. In retrospect I greatly appreciate the compliment. We should all strive to be the nice one. We should all let the light shine through our cracks…

I’ve gone through another period of inconsistent writing and I find I miss the outlet terribly. Life gets in the way of my creativity! It inspires it as well but when writing is more the hobby and work and family responsibilities fill much of each day, hobbies take the back burner. Nevertheless, I’ve challenged myself to make a bigger effort to sneak in a bit of writing each day. The truth is, it benefits my mind and soul, so it’s a valued effort.

I turned 54 on the 4th…While I love birthdays, particularly other people’s birthdays, I don’t generally feel the creeping up of the years to be bothersome. This year though it did make me feel introspective. Though I do have some self-awareness and keen sense of the things I need to do maintain my health, sanity, and joy, I do have a tendency to shirk some of the responsibilities that are required to maintain myself. This year I made a decision that I will shirk less and go through my 55thyear taking better care to make time to exercise, write, enjoy my family and friends and to step out of my comfort zone as much as possible.

I’ve actually been attempting to try new things and put myself out there throughout the past few months. Nothing radical, small steps to expose myself to new experiences, places, and people. It’s been a wholly positive endeavor. I took a girl’s night out grilling class and wound up sharing a table with two women, both of whom are speech pathologists and one of whom had coincidentally worked at my son’s school for a brief time. What are the odds?

I also took a chance and applied to a writing program that Imagine Entertainment just launched. Beyond the lengthy application, that included a video component, I had to provide a project I would like to develop (I have a TV series idea that I’m working on) and other writing samples. I was not among the handful selected (over 4,000 writers applied), but I feel proud that I put myself out there and gave it a shot. I plan to try again for their next session in February. It will give me some time to get my ideas in to a better format and who knows??? Another coincidence, my company moved into the same building as Imagine a couple of weeks ago!

I look forward to having a successful self-motiving, self-aware, self-caring, self-sharing year. I want to be present and well for myself, my family, my friends and for any new challenge or experience that comes my way.